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Discover Pediatric Collections on COVID-19 and Racism and Its Effects on Pediatric Health

American Academy of Pediatrics
Article

Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology

Marie-Hélène Lizotte, Keith J. Barrington, Serge Sultan, Thomas Pennaforte, Ahmed Moussa, Christian Lachance, Maia Sureau, Yilin Zao and Annie Janvier
Pediatrics February 2020, 145 (2) e20191925; DOI: https://doi.org/10.1542/peds.2019-1925
Marie-Hélène Lizotte
aCentre de Recherche,
gDepartment of Pediatrics, Hôpital de Rimouski, Rimouski, Canada;
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Keith J. Barrington
aCentre de Recherche,
cDivision of Neonatology,
jDepartments of Pediatrics,
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Serge Sultan
aCentre de Recherche,
jDepartments of Pediatrics,
kPsychology, and
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Thomas Pennaforte
aCentre de Recherche,
lEducation, Université de Montréal, Montréal, Canada; and
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Ahmed Moussa
aCentre de Recherche,
bMother-Child Simulation Center,
cDivision of Neonatology,
eSoins Palliatifs, and
iCentre de Pédagogie Appliquée aux Sciences de la Santé, and
jDepartments of Pediatrics,
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Christian Lachance
aCentre de Recherche,
cDivision of Neonatology,
jDepartments of Pediatrics,
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Maia Sureau
mParent Representative
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Yilin Zao
aCentre de Recherche,
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Annie Janvier
aCentre de Recherche,
cDivision of Neonatology,
dUnités des Éthique Clinique and
eSoins Palliatifs, and
fBureau du Partenariat Patients-Familles-Soignants, Centre Hospitalier Universitaire Sainte-Justine, Montréal, Canada;
hBureau de L’éthique Clinique,
jDepartments of Pediatrics,
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  • FIGURE 1
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    FIGURE 1

    Communication strategies when communicating with parents of an unstable child at risk for dying. Example of a “time-out checklist” filled by the resident taking care of Caleb.

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    TABLE 1

    Evaluation of Participants’ Scores

    Junior ResidentsSenior ResidentsNeonatologists and FellowsTransport Team and NNPs
    Technical scores, scored on 100, mean (SD)77 (9)82 (8)82 (8)88a (6)
    Overall performance, scored on 10, median (IQR)7 (6–8)7 (6–8)8a (6–10)7 (5–9)
    Communication with parents during the resuscitation, scored on 10, median (IQR)8 (7–9)7 (6–9)8 (6–10)6 (5–8)
    Communication with parents after the resuscitation, scored on 10, median (IQR)7 (6–8)7 (6–8)8a (9–10)8b (8–10)
    • IQR, interquartile range; NNP, neonatal nurse practitioner.

    • ↵a Significantly higher than the other 3 groups.

    • ↵b Significantly higher than the residents.

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    TABLE 2

    Interaction Between Providers and Parents Before a Resuscitation

    Interactions With Parents Before a Resuscitation ExamplesQuotes From Evaluators or Examples of Participants’ Interactions Reported by Evaluators
    Examples of Behaviors To AdoptExamples of Behaviors To Avoid
    Acknowledge parents and introduce yourself

    “He established eye contact, the parents knew he was there.”
    “Spoke in clear terms. 'Mr and Mrs Smith, I am Melanie, the baby doctor.'”
    “She didn’t even look at the parents, totally ignored them.”
    “A neonatologist, normal people don’t know what that is.”
    Know and use the name of the infant“She asked if they had a name and used it.”
    “We will be there for Beatrice when she is born.”
    “He messed up the sex of the baby. It was indicated the baby was a girl on the instructions.”
    Prepare the parents:
    what is about to happen;
    time constraints;
    you are there
    “He prepared the parents for what was about to come and that they may not have much time to speak later.”
    “Beatrice could need some help at birth. We always prepare for the worst but hope for the best. Sometimes, we cannot talk to parents much when we help babies, but we are there for you.”
    “She said everything would be okay without looking at the parents.”
    “She said ‘don’t worry’ in a carefree way.”
    “He said everything was under control when it was clear it wasn’t.”
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    TABLE 3

    Interaction Between Providers and Parents During a Resuscitation

    Positive Interactions With Parents During the ResuscitationQuotes From Evaluators or Examples of Participants’ Interactions Reported by Evaluators
    Examples of Behaviors To AdoptExamples of Behaviors To Avoid
    Acknowledge the presence of the parents; let the father approach the bed Use the name of the infant"She told the dad he could take his baby’s hand."
    "He told the father to come closer.”
    "Stay where you are, we don’t have time to speak to you.”
    “Don’t touch your baby."
    Use the name of the infant"He continued using the name of the baby.""He said 'your son' when it was a daughter."
    Prepare parents for the death in 2–3 steps“"She prepared parents for the death in several clear steps. Said it was not going well and that she hoped Beatrice would improve, then that she was trying a last dose and if it didn’t work, Beatrice would die. Then she told them Beatrice was dead, that they did everything they could.""It was very unclear what was going on. She seemed overwhelmed, then said the heart did not come back. It was unclear if the baby had died and when."
    Say the words (“death,” “dying”) "It was clear, he said they did their best, but that she died, Beatrice was dead. He used the words.""'She is with the angels?' Really?"
    "'She was born with no heart?' Who understands that?"
    Remain calm"She was confident, I would trust her.""He was jumping up and down and losing it."
    Do not ask for parents’ permission to stop resuscitation"It was clear they had done all they could, and she said it was time to stop.""'Do you think it is a good time to stop?' Really?" "
    He asked the parents if he should stop."
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    TABLE 4

    Interaction Between Providers and Parents After an End-Of-Life Scenario

    Quotes From Evaluators or Examples of Participants’ Interactions Reported by Evaluators
    Examples of Behaviors To AdoptExamples of Behaviors To Avoid
    Positive interactions with parents after the resuscitation
     Clearly state the child died“She is dead, I am sorry.”“He just said it was tragic but did not mention death once.”
     Avoid medical jargon related to death“We tried everything we could to save her life, but it didn’t work. She is dead.”“She was born without a heart; it never came back.”
     Tell parents they could not have prevented the death“There is nothing you could have done to prevent this.”“She told the parents it was a shame they did not come to the hospital earlier.”
     Listen and provide moments of silence“She spoke slowly, listened; there were many pauses.”“He just wouldn’t stop speaking. Parents couldn’t get a word in.”
    Provide proximity
     Provider-parent“The doctor was sitting on a chair, at the same level as the mom in her bed.”“She was standing up, in the corner, with no eye contact.”
     Provider-infant“He took the baby in his arms and you could tell he cared.”“He just left the baby naked on the table when he went to speak to the parents.”
     Parent-infant“She placed Beatrice in the parents’ arms, placed all 4 hands together, after telling them she would.”“She spoke to Dad alone, then went to speak to Mom, and the baby was alone on the table, dead. Everybody was alone.”
    Be knowledgeable about what happens after death“He knew what happened to the body, the practical aspects after death.”“He had no idea about the body and the next steps: did not inspire trust.”
    Offer “formal” support“She said she would call the psychologist.”“She just left the room.”
    Offering future support“I will always be there in the future if you have questions.”“She ended abruptly, did not offer follow-up.”
    • View popup
    TABLE 5

    Comparison or Behaviors Displayed by Top 10 Communicators Versus Others

    Proportion of Participants Adopting the Following Positive BehaviorsIn the Top 10, %Not in the Top 10, %
    Throughout the resuscitation
     Used name of infant**9062
    Before the resuscitation
     Introduced themselves10078
     Mentioned the resuscitation could be difficult10080
     Mentioned that communication during resuscitation would be difficult10080
    During the resuscitation
     Allowed father to approach the bedside**9062
     Acknowledged the presence of the father**9062
     Encouraged the father to report back to the mother8062
     Acknowledged the presence of mother100100
     Prepared parents for the death in a stepwise fashion*10065
     Stopped resuscitation <15 min10080
     Took the decision to stop the resuscitation (did not ask parents)10080
     Stated clearly that the infant was dead**9050
     Noted time of death9078
    After the death
     Stated there was nothing parents could have done to prevent this**10065
     Placed the infant in the mother or the father’s arms10071
     Touched the mother9090
     Sat down*7029
     Allowed opportunity for parents to ask questions (30 s silence)10080
     Knew what happened to the body after death**10031
     Offered creation of souvenirs9090
     Offered to call family or spiritual supports10078
     Offered future support*10065
    • ↵* P < .05

    • ↵** P < .01.

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Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
Marie-Hélène Lizotte, Keith J. Barrington, Serge Sultan, Thomas Pennaforte, Ahmed Moussa, Christian Lachance, Maia Sureau, Yilin Zao, Annie Janvier
Pediatrics Feb 2020, 145 (2) e20191925; DOI: 10.1542/peds.2019-1925

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Techniques to Communicate Better With Parents During End-of-Life Scenarios in Neonatology
Marie-Hélène Lizotte, Keith J. Barrington, Serge Sultan, Thomas Pennaforte, Ahmed Moussa, Christian Lachance, Maia Sureau, Yilin Zao, Annie Janvier
Pediatrics Feb 2020, 145 (2) e20191925; DOI: 10.1542/peds.2019-1925
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