Trends in Palliative Care Research 2020; Issue #3

Commentary by Julia St Louis, RN at BC Women’s Hospital NICU

Feature Articles: Lizotte, M. H., Barrington, K. J., Sultan, S., Pennaforte, T., Moussa, A., Lachance, C., Sureau, M., Zao, Y., & Janvier, A. (2020). Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology. Pediatrics.

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“But what do I say?”

When I first cared for a dying patient in the NICU, I was given no advice on how to communicate with the baby’s family. I was supported and told “you’ll be great,” but practical advice and communication tips were nowhere to be found. I fumbled, and I have no doubt that some of the things I said were ungraceful and inept.

Many care providers can relate to this sentiment in the context of caring for an actively dying child. The typical advice is to be “warm and compassionate”. This advice is non-specific and difficult to apply. The literature has been equally sparse; there are few papers about communication techniques in palliative care that have included bereaved parents as evaluators.

In this study, clinicians participated in a high-fidelity simulation of a neonate in distress. In the scenario, the resuscitation was unsuccessful. Actors were present to simulate parents, and clinicians were asked to interact with the parents as they would in their practice.

Evaluators (including bereaved parents) assessed communication between clinicians and the actors. The study identified key elements of communication which supported both effective resuscitation and communication with the family. The key elements were 1) recognizing the presence of parents, 2) using the name of the infant, 3) preparing the parents for death, 4) using the words death, dying or dead, 5) remaining calm, 6) making a clear decision to stop resuscitation without seeking permission from the parents (Lizotte et. al, 2020). Clear core behaviours were also identified for after resuscitation.

Future work may assess the possibility of integrating the core behaviours identified by the study into NRP courses. They could also be included on algorithm printouts. If they are taught with NRP, parents of children who die might be more likely to feel that they were communicated with in a supportive manner during their child’s final moments. Clear, unambiguous communication is a key resuscitation skill. It is equally important to communicate clearly with parents.

Some might argue that developing a ‘formula’ for this type of communication is insincere, but a clear checklist has been shown to improve care in many scenarios. It might be most helpful for providers to use the language identified by stakeholders as preferable in these situations. Standardized order sets and protocols for a variety of clinical pathways are commonplace in the NICU, and they keep patients safe. It only makes sense to extend that logic to grieving families who so desperately need for us to say the right things.

Future research could explore specific language use during other clinical scenarios such as compassionate extubation, refusal to provide futile resuscitation, or family meetings that suggest a shift towards palliative care. These clinical scenarios often involve more discussion, and more opportunity to use the best language. Many families likely need to hear similar core statements in the event of their child’s death- future research should work to identify what these are in a variety of clinical scenarios. As a new nurse caring for a dying infant, I struggled significantly to come up with a twelve hour shift’s worth of appropriate, supportive things to say. I walked away doubting most of it. Knowledge about these core behaviours would have drastically improved the care I provided. I hope that research that asks parents the difficult questions continues to be produced. Palliative care can’t be improved if we are not including the family voice.