Better Communication with Parents at the End of Life: Concrete Actions for Optimal Support

Pediatric clinicians are urged, when communicating with parents during end-of-life care situations, to be empathetic, warm, and compassionate. These recommendations generally do not include practical suggestions and have little evidence that parents value specific communication techniques.

We conducted a study published in Pediatrics, the result of the work of a passionate and dedicated research team, including Christian Lachance, Ahmed Moussa, Thomas Pennaforte, Keith Barrington, Serge Sultan and Maia Sureau, a parent partner. This article addresses a delicate but crucial topic: how to better communicate with parents when their baby is in critical condition or at the end of life.

In a neonatal simulation study, several simple clinician communication behaviors performed before, during, and after the resuscitation were consistently identified by parents and a variety of pediatric clinicians as optimal communication techniques.

A Study to Identify Best Practices

The goal of our study was to determine simple and accessible actions that allow all clinicians to better support parents during these heartbreaking moments.

We conducted this research with a multidisciplinary team, including Maia Sureau, a mother of five children, two of whom passed away in the neonatal unit.

How Did We Proceed?

We recruited 31 clinicians from various professions (residents, neonatologists, fellows, transport teams, etc.) who regularly participate in neonatal resuscitations. They were placed in a simulation where a baby (mannequin) was born with no signs of life and did not improve despite effective resuscitation. In the room, actors played the role of the parents.

These interactions were filmed and then evaluated by 21 observers (including parents who had experienced perinatal loss and the actors playing the parents). In total, we collected 651 evaluations to identify the behaviors that make a real difference.

What We Discovered

The parent evaluators and clinicians agreed on what constituted a good communication in 81% of cases. We were also able to identify what the best communicators did differently.

Before Resuscitation

Acknowledge parents and introduce yourself

Know and use the name of the infant

Prepare the parents for what is about to happen: time constraints, you are there

During Resuscitation

Acknowledge the presence of the parents; let the father/parent approach the bed

Use the name of the infant

Prepare parents for the death in 2–3 steps

Say the words (“death,” “dying”), avoid euphemisms or metaphors (e.g., We are removing the tube. Simone has passed away. Simone is dead.)

Do not ask for parents’ permission to stop resuscitation.

After Resuscitation / Death

Clearly state the child died

Avoid medical jargon related to death

Tell parents they could not have prevented the death

Provide proximity: parent-child, clinicial-child-parents

Make eye contact with the parents and embrace silence (at least 30 seconds without speaking)

Be well-informed about post-death procedures (what happens to the baby’s body, what the next steps are)

Clinicians who applied all these strategies received ratings above 9/10.

Simple but Important behaviours

These behaviors are accessible to everyone and can change the experience of families. Personally, I now use these checklists list in these difficult situations to ensure nothing is forgotten.

Conclusion

Any clinician can learn to communicate better with families. It is not a matter of innate talent but of using simple behaviors. We all have the power to support families and makes a difference.

Read the full article here:
https://publications.aap.org/pediatrics/article/145/2/e20191925/81675/Techniques-to-Communicate-Better-With-Parents