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Sharing Life-Altering Information - Pediatric/Neonatal - Inpatient/Ambulatory/Emergency Department

Sharing Life-Altering Information - Pediatric/Neonatal - Inpatient/Ambulatory/Emergency Department - Clinical Hub, UW Health Clinical Tool Search, UW Health Clinical Tool Search, Clinical Practice Guidelines, Patient-Centered Care


Sharing Life-Altering Information to Neonatal/Pediatric Patients & Families
Guideline Summary
Target Population: All neonatal and pediatric patients cared for across any healthcare setting.
Full Guideline: Sharing Life-Altering Information – Pediatric/Neonatal – Inpatient/Ambulatory/Emergency Department
Inform the family as soon as possible; avoid inadvertently sharing bad news by being overheard!
SET up the meeting
 Private location and adequate time
 Remove distractions and minimize interruptions
 Set family expectations:
ξ Where and when?
ξ Who will be there? Wait to tell when both
parents/guardians at the same time?
ξ Should patient be there?
 Prepare health care team:
ξ Limit the number of team members
ξ Review family culture, dynamics, beliefs, etc.
ξ Review clinical findings/available treatment options
ξ Who is the leader or facilitator?
ξ Are team members ready to respond to family’s
emotions and questions?
Assess family’s PERCEPTIONS
 BEFORE telling, ASK what patient/family knows first
 Correct misinformation
 Determine if family in denial or has unrealistic expectations
 “What have you been told about your child’s
medical situation so far?”
 “What is your understanding of the reasons we
did (particular test)?”
 Tell me what you know about what is making
you sick.
INVOLVE family
 Encourage family to express concerns and ask questions
 Consider providing meeting agenda ahead of time
 Be sensitive to culture, race, religion, socio-economic status
 Involve interpreter services if needed
“We plan to cover what’s happening with your
child, what we are planning to do about it, and to
answer any questions you may have. Is there
additional information you’d like us to cover?”
Share KNOWLEDGE
 Start with “warning shot”
 Pace information and check patient/family’s understanding
 Repeat key information as needed
 Don’t lecture or use clinical jargon
 Be honest that the future can be unclear; hope can be powerful
 “I have some difficult news to share.”
 “I’m sorry to tell you that I’ve got some bad
news to share with you.”
Address EMOTIONS
 Allow for silence, disbelief, denial, tears, etc.
 Do not equate your own experiences to those of the family
 Be empathetic
 Explore or clarify family’s thoughts/feelings
 Validate emotions and reactions
 Emphasize continued support and commitment to symptom
control and quality of life for the patient
 “I can see how upsetting this is for you.”
 “I can tell you weren’t expecting to hear this.”
 “I was hoping for a better result.”
 “Tell me more about it.”
 “Could you tell me what you’re worried about?”
 “I can understand how you felt that way.”
SUMMARIZE
 Summarize important points; verify understanding
 Emphasize mutual goals and timeline (Including therapeutic goals such as palliative care, symptom control, etc.)
 Reassure patient/family they will participate in care decisions
 Offer help sharing information with others as appropriate (e.g., patient, siblings, etc.)
Copyright © 2018 University of Wisconsin Hospitals and Clinics Authority
Contact: Lee Vermeulen, CCKM@uwhealth.org Last Revised: 01/2018CCKM@uwhealth.org