Nebulous Conversations in Uncertain Circumstances: Improving Counseling at Borderline Viability

February 12, 2020 by hh5ax@virginia.edu

By Dr. Peter Murray, Neonatologist, Neonatal Intensive Care Unit

Dr. Peter Murray

Q. Tell me about what you are working on now.
A.
Currently, I am part of a national group studying several essential facets of resuscitation at borderline viability. Briefly, there exists a gestational age wherein resuscitation in the delivery room would not benefit the infant given it cannot succeed, and therefore it should not be offered or provided. Neonates just above this absolute threshold are said to be at the borderline of viability, and the parents much inform resuscitation options for them under the auspices of shared decision-making. We are interested in what those providing counseling at these borderline gestational ages discuss with families as well as what they find most important in those discussions.

After an exhaustive literature search, we formulated a comprehensive checklist of ideas we deemed crucial to counseling at these periviable gestational ages. We then sent a survey to randomly selected neonatologists and Maternal-Fetal Medicine specialists for their feedback on what we as a study group deemed crucial.  We are analyzing this data now. The next steps include mock consultations with neonatologists that we will grade according to our checklist and dissemination of our checklist to the academic community at large via publication.

Q. When you talk about “absolute threshold”, is there a certain week that is determined?
A. Physiology governs absolute threshold. Baby’s lungs are remarkably complex, and, as gestation progresses, they become better equipped to transition from a liquid-lung interface to an air-lung interface. What occurs in the canalicular lung phase of development occurs from about 16 weeks to about 25-27 weeks gestation. This stage of development enables babies to make that transition to an air interface because special cells differentiate into the cells that will one day support the lungs’ ability to expand correctly, the last generations of the lung periphery form, and, most crucially, the lungs establish the air-blood barrier. Before this, gas exchange, as we know it, cannot take place in an air environment. This ability probably arises in the latter part of the canalicular stage, or at around 22-23 weeks gestation. Therefore, babies in the earlier phase of the canalicular phase would not benefit from resuscitation given it cannot work.

Now, these physiologic realities do not obey our gestational age numbers, which is why some babies at 24 weeks’ gestation may have feeble lungs, whereas some at 22 weeks’ gestation may not. Also, we can only guarantee our predictions about gestational age in cases of artificial fertilization. The size of the baby dictates other hard cut-offs. There are limitations to the size of our equipment governed by anatomy and physics (especially the physics of airflow and resistance). There is work being done to prolong the potential time a baby has in the liquid interface to improve outcomes and increase their gestational age at birth. This is the artificial placenta, and I do predict this will allow some babies to prolong gestation outside of mom to allow for further lung (and other organs) development. Importantly, the intent of this technology is not to further decrease the gestational age at which we offer life-prolonging or life-saving intervention.

Q. Tell me more about the checklist.
A.
An essential part of the checklist centers on the center-specific or regional outcomes data and how confident those providing counseling are in those data. This confidence is crucial because we at UVA may have a mortality of X% for a certain gestational age but, quoting percentages from another center with different experiences would not adequately inform the family.

The checklist guides you through discussing outcomes and asks you also to stop and pause to ask what the family has understood. We try to use the family’s ability to repeat back to us what we’ve stated as a surrogate for their understanding, but it is not always as simple as that. The checklist helps prompt questions to gauge understanding in terms of what that means for the patient’s family. Examples include, “What does this mean for you and your family?” and “I know this is different than what you expected, but how can we help you with this new situation?”.

Our literature search led us to realize that many families desire validation for the complex emotions they feel during these consults. The checklist offers prompts for that as well.

Q. Where did you get the idea/why are you passionate about this?
A.
A colleague, friend, and fellow ethicist reached out to me and asked me to be a part of this working group. Overall, I have been particularly interested in this population, and others given prior work I did in unilateral do not attempt resuscitation decision-making.

Q. What do you feel is the most exciting part of this work?
A. 
The ability to discuss decision making for this population is inspiring, especially because I have the honor of doing so with leaders in neonatal ethics. Babies born at the borderline of viability are often at the center of complex discussions related to healthcare economics and biomedical ethics. Opinions about their care are passionate, heartfelt, and informed by our prior experiences in intensive care. Discourse with other professionals and, more importantly, parents, about their passionate opinions, invigorates me.

Q. What is the main goal of the study group?
A. 
The study group’s goal is to inform shared decision-making for neonates at borderline viability gestational ages. This notion is essential because the resuscitation of an infant should not depend on the preference of the provider but, instead, be as a result of shared decision-making. A provider is free to offer their medical opinion for what should occur in a particular situation, but a patient’s family should not receive different options for resuscitation based only on who provides the counseling. We hope our checklist if accepted as an appropriate aid in consultation, will help address potential violations of justice.

Q. Who will be helped by this work?
A. 
Families, as well as those providing counseling, will benefit from this work. Counseling in the periviable age range is daunting, particularly for those in training. A reference or standardized approach will go far in helping ameliorate the apprehension inherent in periviable counseling.

Q. Is there one story that really stood out to you?
A.
I’ve participated in the counseling of many families with fetuses at periviable gestational ages. Some of them lived, and some of them died. They have all left a mark on me somehow, and I use their stories to inform my counseling going forward.

One story that resonates with me involved a periviable twin pregnancy. The twins delivered very early, and both were very small. One of the twins was so little that our equipment was too large to resuscitate the baby successfully. The smaller baby died in the delivery room, held by the parents, while the bigger twin lived and did very well. This duality in outcomes is ever-present in these tiny babies, and this case illustrated that for me, poignantly.

Q. What have you learned that you’d want to share with others in the department?
A. 
Well, one thing I always discuss with our trainees is the impact of our words. Medical lexicon is full of words that need qualifiers or specific definitions as they apply to the case at hand. For example, the primary medical team, the subspecialty medical team, the nursing team, chaplaincy, social work, and the family can all hear something very different when someone uses the word “futile” in a family meeting setting. Without specific qualifiers of the whats and whys of words like “futility,” there exists the potential for misinterpretations, heartache, disagreement, moral distress, and strife.

Q. Anything else you’d like to add?
A. 
Our prior experiences in complex cases shape our moral intuition. Behind our opinions about a particular case are the multitudes of patients that influenced us in the past. It has been a pleasure to hear how past patients influence the members of our department and shape their decision making.

 

A note from Dr. Susan Almarode, board certified Neonatal Nurse Practitioner, UVA Children’s Hospital Neonatal Intensive Care Unit:
Resuscitation at the cusp of viability has been a topic of robust discussion for the 28 years I have been in clinical practice.

The bar for resuscitation shifted from 24-25 weeks down to 22-23 weeks as treatments and therapies advanced. Now our discussions revolve around the anatomical and physiologic limitations for the fetus that simply cannot support gas exchange and pulmonary functioning based on vascular and alveolar development as well as what determinants for quality of life are important to families when we think about long term outcomes. How we provide counseling and present this information to parents and filter our own bias is certainly crucial.

I think Pete and I have a shared passion for navigating moral and ethical decision making in the neonatal population and pull from our deep reservoirs of compassion and empathy as we try to understand the emotional and stressful impact hospitalization has on families. During times of intense crisis, we ask parents to hear and comprehend information, and then try to guide them in making informed decisions. As providers we often struggle with what is realistic care to offer, what are realistic goals of treatment, how do we continue to provide care when parents make decisions we disagree with, and when do we cross the threshold from “doing something for a baby to then doing something to a baby.”  We must remember that the work we do is emotional, and our words and actions have meaning and consequence.

My personal interest in ethics came during my doctoral studies through course work I did with Drs. Beth Epstein and Mary Faith Marshall. In my early nursing career and when I returned to UVA as a nurse practitioner, I looked to Dr. Robert Boyle for guidance in communicating with families and applying ethical models for decision making. These three providers currently lead the Ethics Consult Service. Pete joined UVA in 2018 and we found a kinship in our interests and communication styles. We have worked together to assess and address parental depression and stress in the NICU and to create a culture of open dialogue when faced with difficult decisions in managing complex patients.

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