Trends in Palliative Care Research 2022; Issue #11

Commentary by:

Dr. Anthony Hopkins, University Hospitals Bristol & Weston NHS Trust UK-trained Paediatrician with Canadian fellowship in neonatology now working in NICU transport in south west England. Additional interests in medical education, simulation and palliative/complex patient care.

Feature Article: 

Sullivan, A., Arzuaga, B., Luff, D., Young, V., Schnur, M., Williams, D., & Cummings, C. (2022). A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity. The Journal of Pediatrics.

For this article, researchers in a cluster of academic and community hospitals in the north-eastern United States conducted structured interviews with parents within 96 hours of antenatal counselling with neonatal teams to understand the impact this had on them and their decision making. I was drawn in by this opportunity to hear what families really thought about their experience and to think about what success looks like in this process which is a common part of my day-to-day practice.

For those unfamiliar with the process, one of the crux problems in neonatology is the steps we take for pregnant people at the extremes of prematurity, currently considered by most authorities and this paper as between 22 and 26 weeks of gestation. At the bedside, it is not always easy to know which pregnancies will deliver early and from there; when and how to use medicines or surgery to support those deliveries and optimise outcome. We have to support parents through this, preparing them for long intensive care stay with the hope of taking their baby home or the awful possibility of losing their child.

Historically, teaching on this often focused on using outcome statistics to lay out information squarely for parents on generic rates of survival and severe disability for given weeks of gestation . Many clinicians and families orientated around the concept of “Viability”, the idea that a single calendar date could sum up all the complex physiology involved and give us clear decision making as to who should be offered survival-focused treatment. This article, in common with most literature and clinicians over the last five years, notably avoids this and the picture it paints; of clinicians and parents collaborating on decision making and risk management, is one I recognise but which might be surprising to anyone who hasn’t encountered neonatology in a little while.

In this study, the median gestation was 24+4w, parental age was 32 years with an interquartile range 29-36 and with a high level of educational attainment, with 45% of participants holding an advanced degree and just 17% holding high school level qualifications only. The author’s acknowledge this in their discussion and although they have a remarkably good take-up (39 interviews completed from 54 potential participants approached) I wondered whether a degree of self-selection had taken place amongst those who felt most comfortable to take part in such a study. 27% of pregnancies were conceived by IVF, higher than the general population, again making me wonder about a selection of participants with a high degree of health literacy and experience in engaging in complex medical conversations as a result of their prior experience.

The authors drew four novel subthemes from their interview data: “Making the tangible intangible”, “The unspoken”, “Finding balance” and “Team synergism”. In their diagram summary of themes, they put these subthemes under an umbrella of “Need for reassurance” and wrapped up by “Dynamic decision making”.

From these themes, it is dynamic decision making as a concept that has made the greatest impact on my day-to-day thinking, from my time training in palliative care, and it is repeatedly emphasised in these interview data. It is profoundly useful to support families in a way that demonstrates the options available at each juncture and doesn’t force commitment to a single factor from one decision to the next. A high standard of dynamic decision making links closely to team synergism, so the doctor called to the 3am emergency can work in harmony with the discussion had two days previously.

For me, at the heart of all difficulties in this process is doubt. As a science, we do not know everything and even if we did, we can’t see the future. However, decisions must be made. Either an invasive procedure is carried out or a medicine is given or it is not and we must make those decisions knowing that we may ultimately come to wish we had chosen differently. From these data, parents need us to balance our hopes and our worries when we express these kinds of uncertainties and it is through our manner and approach that we do this, rather than through any specific language. It is in the melody rather than the lyrics.

Knowing this about doubt and about how we present to parents, I reflect that we need to think extremely carefully about any tools, like graphs and charts or videos, that we bring into the consult. We must not cling to them like a life preserver in choppy waters but to think about their role in those other themes; making things tangible and bringing out the unspoken. I also reflect with a degree of relief that I don’t need to sweat about every word choice, but I don’t think I could ever chose that language lightly and I don’t believe, particularly referencing other data about delivering difficult news to parents, that a poor choice couldn’t be utterly catastrophic for a family.

Finally, the authors had one finding which to me was surprising; that most parents overall did want to shoulder the burden of responsibility for the final decision. Certainly I have met parents who felt this way but it conflicts with the massive variation myself and many of my colleagues observe when we debrief each other. There are many parents who report that they simply do not have it in them to carry these profound decisions and, through sharing their hopes and fears, often lead you as a clinician to make decisions that fit for them in a more nuanced fashion.
It also potentially points to the root of parent-professional conflicts, as clinicians hold legal and ethical duties to the child, separate from the parent, which we take profoundly seriously. The potential difficulty with a parent who sees their decision as paramount is obvious.

Which brings me to finish by going back to what drew me to this paper: What does the successful antenatal consult look like? Certainly families who feel supported, who build a therapeutic relationship with the NICU team for the long road or who are able to grieve a profound loss are all important and this paper I think helps us refine how we approach parents to achieve these critical outcomes. However, as paediatricians we act for the child above all else and I’m not sure these data address that factor. For future study, I would love to see viewpoints from these families longer down the road and particularly see how they thought their antenatal consult impacted their child and the family’s longer term relationship with health professionals.

Other articles recommended
New BAPM Framework on Extreme Preterm Birth Published | British Association of Perinatal Medicine

View the Issue #11 Citation List in Library

View a PDF of the Issue #11 Citation List